Trip to the Neurologist today

[Loopy Lou]

God i hate these appointments. Anyhoo me and my mum are going to do a little shopping and stuff before we actually head to the hospital. I go to one in a different town because it has a good neurology department.

I really wish i could actually stick to filling in a diary. I'm currently making notes of stuff i want to ask him, but a lot of it sounds really silly and sort of insignificant.

Don't know why i still get so nervous - before the epilepsy i never really had to deal with docs and hospitals much.

Yeeeeeeeeek

[Loopy Lou]

Heading off in a minute. I'm such a worrier lol.

[horsehead]

I hope all goes well.

[Nakamova]

Let us know how it goes!

[lindinig]

Good luck, don't worry about asking the doctor silly questions. You want to make sure you get the best treatment possible for your condition and all of those supposive silly questions may help you better manage your condition.

[Loopy Lou]

Well that was a fat load of nothing.

Wish there could be simple "yes, no" answers. He asked me if i was having nocturnal seizures and i had to say that i don't know for certain but i strongly suspect it. I told him about the tongue chewing, mystery bruises etc and said that i'm still having a lot of blank moments and doing strange things.

He just listened and didn't actually say anything. Anyhoo, the plan is to get me off Lamictal completely and just be on Keppra.

My medications have been changed around so much that i'm thoroughly confused, and i still have no idea whats going on in my own head. I wonder what would happen if i just stopped taking them. Maybe my head would un-fuzz a bit and then i would be able to tell if it's the meds or not. It's a seriously tempting thought.

I'm going to have to try harder to keep a diary, cos most of the time i don't know if some things are the medication, if it's simple/complex partials or just me being dopey, and it seems to be getting harder to tell. He did say to my mum though to keep an eye out for it, and to make a note or tell me if i do anything strange or if there's some sort of pattern emerging. I can hardly ever remember stuff anyway.

Grrrrr. One good thing came out of the day though - during my pre-hospital shopping trip i got myself a nice new red jacket and a cool pair of trainers (sneakers). Shopping makes Lou happy

[Loopy Lou]

The upshot is that i managed to get some NSE leaflets/booklets and stuff which i'm going to take to work with me and get my boss to read. At least then she might realise that i'm not making stuff up when i try to tell her whats happening.

There's an interesting one on employment and epilepsy ¬.¬

[valeriedl]

The easiest way I found to keep a diary is to buy one of those cheep pocket calenders. Keep it with you all the time and mark down when you've had a sez, if you feel wierd or something like that. Then you can see how often these happen.

I also have post-it notes in mine that I write down little things that I want to remember to ask the neurologist when I go to see him.

Before the visit I take the time of going through the calander and sort out when I had the sez, how long they lasted and how I felt afterwards. I also make sure I write down any of the other questions (no matter how stupid I think they might be) so I won't forget to ask him.

I know that this has helped us alot with figuring things out and me not forgetting to tell him things.

[Crystal11]

Doctors are there to take care of you. If you have questions, they prefer that. It shows that you are apart of your medical team and are in charge of helping yourself. They are there working for you- if you have any questions, ask them. They won't bite.
They are there for that reason along with your treatment.

I ask questions about anything I don't understand fully. I feel in better control of everything when I know the info better.
Some doctors do get a little high on themselves when you ask questions or have concerns and ask a lot of questions. BUT if you have a good neurologist, then they should not have any trouble answering your questions.

Please take care,
Let us know what's up.

Crystal

[Loopy Lou]

I think i have a spare mini-diary about somewhere, so i'll have to use that. I think the problem is that most of the time i just brush things off and think "nah, thats not worth writing down"

Maybe if i actually made an effort to remember writing in a diary i might get somewhere.

Anyhoo thanks for the reply guys - that's the neurologist visit over with for another 6 months anyhoo.
edit - 500th post, wooo!

[epileric]

I think i have a spare mini-diary about somewhere, so i'll have to use that. I think the problem is that most of the time i just brush things off and think "nah, thats not worth writing down"

Maybe if i actually made an effort to remember writing in a diary i might get somewhere.

What was the online program/site that was recently mentioned to record seizures & activities. Would it be easier to remember if it were online?

[Nakamova]

For tracking seizures...


https://www.seizuretracker.com/

[Blondie47]

Hi...

The diary thing works! It is worthwhile to keep one. Then you will have the facts and a history too!!!

There are so many ways to keep one-- try one that works for you!

Take Care-- btw shopping therapy works for my DD too!

[Loopy Lou]

Ok, i just went and got a personal organizer today, It's small enough that it fits into my handbag along with my normal work diary, and since i always have my handbag with me, then i'm always going to have it.

You know, i picked this and then realised that the legend beneath the pic on the front says "Seen it all, Done it all, Can't remember most of it"

I don't think the online one would be much good for me. If it's not right in front of me, or i'm constantly coming across it, then i'm likely to forget about it.

Oooh, wait! Idea! - I'll write it in my book since i always have that handy, and then i could transfer it to the seizure tracker to see if there's any patterns coming up

Setting up an account now.

Thanks for the advice guys!

[epileric]

Thanks for the advice guys!

Always a pleasure to be of service.

I love the caption on your organizer. I just might have to borrow that sometime.

[Zoofemme]

I like the online seizure tracker you put the link up for much better than the one I was using Epileric. Its much more user friendly thats for sure.

Love that Organizer caption Lou...fits my life completely LOL! The only shopping thereapy works for me is feeding my handbag jones and I've been cut off *boohoo*. Its an expensive habit which I can't afford right now

[Loopy Lou]

I'm finding it pretty easy so far. Maybe i'll be able to actually make some sort of sense of things lol. Nice pretty facts all written up on a computer screen actually makes me feel better cos i can see it all there.

No, really.

[epileric]

Should thank Nakamova too. I forgot what the tracker was called (typical of me) but she put up the link.

[Loopy Lou]

=

Love that Organizer caption Lou...fits my life completely LOL! The only shopping thereapy works for me is feeding my handbag jones and I've been cut off *boohoo*. Its an expensive habit which I can't afford right now

Handbags and shoes *drools* No matter what size you are, you can always find some that fit lol.

Oh wait, i'm getting off topic, aren't i?

Oh holy carp i've forgotten my username already... *figures it out, to write in organizer*